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Healthcare Challenges and Solutions Discussed at the PAN-AJMC Cost-Sharing Roundtable


The event saw participation by patient advocacy groups, health economists, health policy researchers, and patient advocacy groups-the primary interest of the participants was to identify the healthcare-associated economic hardships faced by patients and their caregivers across therapeutic areas and discuss potential solutions that could help alleviate some of this burden.

The Patient Access Network (PAN) Foundation, in collaboration with The American Journal of Managed Care (AJMC), hosted a Cost-Sharing Roundtable on February 26, 2016, at the Henry J. Kaiser Family Foundation’s Barbara Jordan Conference Center. The event saw participation by patient advocacy groups, health economists, health policy researchers, and patient advocacy groups—the primary interest of the participants was to identify the healthcare-associated economic hardships faced by patients and their caregivers across therapeutic areas and discuss potential solutions that could help alleviate some of this burden.

Mollyann Brodie, PhD, executive director, Public Opinion and Survey Research, Kaiser Family Foundation (KFF), was the first speaker of the day. During her talk, Taking the Pulse of Americans: Cost-Sharing and Access, Brodie spoke about 2 recent surveys conducted by the Foundation. KFF’s tracking poll found that paying for healthcare ranks third among patients’ economic concerns, right behind income not keeping up with prices and not having enough after retirement. Half of Americans surveyed for the study said they are either skipping or postponing care to compensate.

A variety of cost sharing can increase patient burden, Brodie said, adding that 20% of patients blamed the high deductible of their health plan while 15% blamed their health insurance premium. “What we found is that 1 in 4 surveyed, who were between 18 and 64 years old, said they had a problem paying their medical bills last year,” which included 53% of uninsured, 26% covered by private insurance, and 47% who had a disability. Coinsurance, copays, and deductibles were the major cause of economic trouble for 75% of the non-elderly insured.

Brodie noted that a majority of people who blamed seeking care from an out-of-network (OON) provider as a reason for their cost burden were just not aware the provider was OON. “Hospital and [emergency department] visits made up the largest share of their bills; as did laboratory fees and diagnostics,” she said.

However, there were those who were aware and had done their research to avoid these avoidable costs. These consumers said they:

1. followed a cost-conscious behavior

2. checked with doctors office and health plans to understand the cost of care beforehand

3. shopped around for best price

4. negotiated with the doctor/hospital

However, 49% of these individuals recounted that it was somewhat difficult to find and adequately use this information. “So consumer efforts may not be the only policy solution here,” said Brodie.

Case Studies

The next few presentations were case studies from various patient advocacy groups who shared their patient data and discussed the most common problems encountered by their patients.

Katherine Sharpe, MTS, senior vice president, Patient and Caregiver Support, American Cancer Society (ACS), said that newly diagnosed cancer patients hear only 30% of what their doctor share with them. “Then they call us at ACS,” said Sharpe. “Those that do contact us with cancer diagnosis are facing significant financial distress as a result of their diagnosis. This makes it imperative for us to make them understand the financial resources available to them. We have a Health Insurance Assistance Service (HIAS) for this, which was initiated a decade ago. What we learnt through HIAS helped position us around healthcare reform.”

“We have seen a shift over time, post [Affordable Care Act]. We have folks not able to afford their copays and deductibles—they are really strained on finances.”

However, a commonly encountered problem, Sharpe said, was being insured but not covered—insurance does not “cover” most of the services patients need for their cancer treatment. With high cost-sharing for covered benefits, lack of adequate coverage was most often encountered by patients. For patients faced with unaffordable copays and coinsurance cost sharing for chemotherapy and radiation can quickly accumulate. “This should not only be a concern for patients and caregivers, but also for the medical community and policymakers,” Sharpe added.

Representing the National Community Oncology Dispensing Association, Inc, or NCODA, was Nancy Egerton, PharmD, BCOP, manager of Pharmacy Services, New York Oncology/Hematology and vice president of NCODA.

“Oral cancer medications are exploding,” said Egerton. “We at NCODA help with in-house dispensing to reduce some of the financial burden.”

NCODA includes 2000 clinical providers from diverse practices of all sizes and it also represents a large payer mix, Egerton said, adding, “Dispensing at the physician’s office could be a very good practice.” To improve efficiency, the in-office dispensing (IOD) practice staffs completes all the pre-authorization formalities right on site, which hastens the process, said Egerton. IOD also works with clinicians and their staff to adapt to frequent dose changes based on patient outcomes, to avoid wastage.

Since Medicare patients do not qualify for assistance from pharma plans/coupons, NCODA uses foundations like PAN to help cover patients’ medication costs.

Leah McCormick Howard, JD, vice president, Government Relations and Advocacy, National Psoriasis Foundation (NPF), stressed the importance of paying attention to the patient’s overall health and not just treating the disease symptoms. “Two-thirds of patients with psoriasis complain of mental stress like anger, frustration etc.”

Controlling the intense pain and whole-body inflammation associated with the disease is important, Howard said. “The challenges is that access problems often stand in the way. In many cases, it comes down to cost.” Financial implications of their treatment often stands between patients and their drug. Once they have access, there’s utilization management issues, she said.

NPF launched a strategic plan in 2014 to improve health outcomes and accelerate discovery for psoriasis. Organizational efforts, Howard told the audience, included legislative and regulatory solutions, patient and assistance support, and engagement with health insurers.

A group that supports hepatitis C patients, National Viral Hepatitis Roundtable (NVHR)/Project Inform, presented next. Christine Rodriguez, MPH, senior policy manager and Andrew Reynolds, hepatitis C education manager, told the audience that curing hepatitis C not only improves the quality of life for the patient, it’s also good for society, is cost effective, and reduces overall healthcare costs.

“Step therapy does not work with hepatitis C and all the new drugs are tiered,” said Rodriguez. “Medicare and commercial insurance plans have come up with utilization and cost sharing models for these expensive drugs, and patients are faced with increased cost sharing.”

They then proposed some direct service solutions to tackle this growing problem. HELP-4-HEP is a phone support line that helps people through the continuum of hepatitis C care, Rodriguez said. A policy solution, she said, include Project Inform Project Inform which provides advocacy to include hepatitis C funding and policy issues at the national and California state levels.

“NVHR serves as a convener to bring people together to share best practices, to identify and overcome barriers at the state level,” said Reynolds.

Following the case studies, the 2 winners of the PAN Challenge Grant on Cost Sharing Strategies presented their winning papers. These will be included in a special supplement to be published by AJMC in March.


The last event of the day was a riveting panel discussion that included a scientist/mathematician who was involved in one of the earliest studies on cost sharing, the RAND Health Insurance Experiment. The roundtable, Exploring Innovative Strategies to Mitigate Cost-Sharing Burden for Patients.

Moderated by Clifford Goodman, PhD, senior vice president, The Lewin Group, the panelists included A. Mark Fendrick, MD, director, University of Michigan Center for Value-Based Insurance Design, and co-editor in chief, AJMC; Emmett B. Keeler, PhD, senior mathematician, RAND Corporation; Emily Gibb, MA, director, Public Policy, GSK; Susan M. Schneider, PhD, RN, AOCN, FAAN, president-elect, Oncology Nursing Society (ONS); Matthew Eyles, executive vice president, Policy and Regulatory Affairs, AHIP; and Dan Klein, President and CEO, PAN Foundation.

“PAN’s mission is that people should have access to critical therapy,” said Klein. “Medicare Part D has helped insure more people than before,” said Klein. While expansion of insurance is good from a population perspective, he said cost-sharing is proving a major problem.

“We think there’s a critical safety net that charitable foundations need to provide and we need to develop alliances and work with patient advocacy groups for this.” While there’s a need to develop equitable and affordable approaches, Klein thinks we as a society are still a long way off from doing so.

Schneider provided insight into how ONS has been helping its nurses on this front to face patients and discuss both clinical and financial issues with them. “At ONS, we educate nurses, not just on new drugs and treatments, but also help them direct patients to financial assistance.” Schneider believes nurse coaching interventions not only help manage side effects and improve adherence, they also make it more cost effective for everyone.

Gibb lent the pharmaceutical perspective to the discussion. “We are seeing a big decrease in uninsured patients leveraging patient assistance programs,” she said, adding that the southern belt still has a high number of uninsured. “We are trying to modernize using mobile apps and other means of technology to help patients.” Gibb said that GSK provides 80% of alternative coverage counseling, which helps patients about 55% of the time with finding alternative insurance policies that can provide better benefit. “So there’s a clear need for increased health literacy in terms of reimbursement.”

“While Medicaid beneficiaries don’t usually face cost sharing issues, Medicare Advantage enrollees will also receive similar benefits as Medicaid beneficiaries,” said Eyles. “It’s really about the underlying cost of care and the cost of these products. While there are certain barriers to implementing them, new models of reimbursement help, but there are limitations when you start thinking about value.”

Keeler spoke briefly about the RAND’s pioneering study—a health insurance trial that assigned people to free care vs a high-deductible plan. “The limit was $3000 annually, and the cost sharing was income-related,” he said. “We measured health during and at the end of the study and the primary outcome measured was ‘Does cost share reduce medical expenditure and is there an effect on health?’”

While cost sharing did reduce health plan expenditure as expected, surprisingly, it did not affect participants’ health. “The result of the experiment was the big expansion in cost sharing in the 80s,” Keeler said.

Goodman asked the panelists to discuss the reasons that led to the evolution of foundations like PAN that have to go seek money to aid patients with their cost sharing.

“I think in 2003, when Medicare Part D was adopted, the pharmaceutical market was very different. Benefit design and the pharmaceutical market have seen fundamental shifts in the context of prescription drugs. As treatments changed during the first 6 to 7 years after Part D was introduced, rise in drug spending was historically low.” He believes benefit design has become obsolete in the context of the rate and the kind of innovation today.

Keeler raised the point that when someone deems a product cost effective, it depends not only on the price, but also on the person who receives the drug.

Klein said that while Part D meets the needs of most patients, for the seriously ill, they end up in the catastrophic phase. We help those who race through the donut hole and end up in the catastrophic phase. “For them, for a short term, PAN and other foundations provide the safety net. But how do you provide the long term safety net?”

Goodman then brought in the subject of non-adherence and asked the panelists whether they believed better interventions were required to ensure patient adherence.

“We advocate for medications that patients can take that make them better adherent and we can help with symptom management,” said Schneider. “This is not easy and then we have to document for nursing coaching on this aspect. We are sending patients home with these drugs and we lose control.”

“What did it take to convince health plans to move to value-based care and are the plans discerned to take this up?” asked Goodman.

Eyles said that Medicare Advantage plans have also been working on adopting value-based care. “We are seeing a much better expansion of value-based agreements between payers and providers. On the pharma side, though, it’s still early days.” Eyles thinks that information sharing and real-time data provision to clinicians is more advanced than the progress seen on the pharmaceutical end.

Gibbs pointed out that there are significant legal barriers to this transition to value-based care. “And the fact that there’s no clear definition of value. Until we can sort through some of these challenges with value of a pharma product, we will be limited.”

Fendrick suggested precision benefit design for that would cater to specific, high-value care based on the patient’s disease state, rather than using a cookie-cutter apaorach.

Gibb added that we need health information technology systems “that can talk to each other for medication management and adherence and provide better, more valuable care.”

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